Five key strategic priorities of integrating patient generated health data into United Kingdom electronic health records

Cresswell, Kathrin; McKinstry, Brian; Wolters, Maria; Shah, Anoop; Sheikh, Aziz

doi:10.14236/jhi.v25i4.1068

Cited by 24 publications

(39 citation statements)

References 24 publications

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“…Using PROMs to measure outcomes of using PGHD has been suggested 9. PROMs allow for a more holistic evaluation of the effects of various health services and interventions 4.…”

Section: Discussionmentioning

confidence: 99%

“…PGHD are created, recorded and analysed by people, who are monitoring their health outside of a clinical care setting. They include health, wellness and other biometric data produced from technologies such as mobile applications, activity tracking devices and simulated rehabilitation technologies 7–9. Utilisation of PGHD by patients promotes participatory health, as it has been suggested to increase their engagement, improve health management coordination with their care providers and increase their sense of social support and connectedness 10–15.…”

Section: Introductionmentioning

confidence: 99%

“…Using PROMs to measure outcomes of using PGHD has been suggested 9. A PROM of using PGHD, or PROM-PGHD, would allow patients to directly self-report their health outcomes or status as result of accessing and using their own PGHD.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Measuring the outcomes of using person-generated health data: a case study of developing a PROM item bank

Dimaguila

Gray

Merolli

2019

BMJ Health Care Inform

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IntroductionPatient-reported outcome measures (PROMs) allow patients to self-report the status of their health condition or experience independently. A key area for PROMs to contribute in building the evidence base is in understanding the effects of using person-generated health data (PGHD), and using PROMs to measure outcomes of using PGHD has been suggested in the literature. Key considerations inherent in the stroke rehabilitation context makes the measurement of PGHD outcomes in home-based poststroke rehabilitation, which uses body-tracking technologies, an important use case.ObjectiveThis paper describes the development of a preliminary item bank of a PROM-PGHD for Kinect-based stroke rehabilitation systems (K-SRS), or PROM-PGHD for K-SRS.MethodsThe authors designed a method to develop PROMs of using PGHD, or PROM-PGHD. The PROM-PGHD Development Method was designed by augmenting a key PROM development process, the Qualitative Item Review, and follows PROM development best practice. It has five steps, namely, literature review; binning and winnowing; initial item revision; eliciting patient input and final item Revision.ResultsA preliminary item bank of the PROM-PGHD for K-SRS is presented. This is the result of implementing the first three steps of the PROM-PGHD Development Method within the domains of interest, that is, stroke and Kinect-based simulated rehabilitation.ConclusionsThis paper has set out a case study of our method, showing what needs to be done to ensure that the PROM-PGHD items are suited to the health condition and technology category. We described it as a case study because we argue that it is possible for the PROM-PGHD method to be used by others to measure effects of PGHD utilisation in other cases of health conditions and technology categories. Hence, it offers generalisability and has broader clinical relevance for evidence-based practice with PGHD. This paper is the first to offer a case study of developing a PROM-PGHD.

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“…Using PROMs to measure outcomes of using PGHD has been suggested 9. PROMs allow for a more holistic evaluation of the effects of various health services and interventions 4.…”

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Measuring the outcomes of using person-generated health data: a case study of developing a PROM item bank

Dimaguila

Gray

Merolli

2019

BMJ Health Care Inform

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“…15 16 Using PROMs has also been suggested as a way to standardise the measurement of PGHD outcomes and strengthen the empirical evidence around PGHD. 3 PROMs allow people to self-report their health status or experience with an illness or treatment, without the need for additional clinician interpretation of the report. [17][18][19] A patient-reported outcome may indicate status at a single point of time, or be compared with previous patientreported outcomes to show changes over time.…”

Section: What Does This Paper Add?mentioning

confidence: 99%

“…People may also record and analyse their PGHD for themselves, which includes wellness and other biometric data. [1][2][3] It has been reported that people who use PGHD have changes in their engagement with their own healthcare, their relationship with their healthcare providers and their sense of social support and connectedness. [4][5][6][7][8][9][10][11] Thus, PGHD utilisation promotes participatory health.…”

Section: Introductionmentioning

confidence: 99%

‘We are very individual’: anticipated effects on stroke survivors of using their person-generated health data

Dimaguila

Batchelor

Merolli

et al. 2020

BMJ Health Care Inform

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BackgroundPerson-generated health data (PGHD) are produced by people when they use health information technologies. People who use PGHD may experience changes in their health and care process, such as engagement with their own healthcare, and their sense of social support and connectedness. Research into evaluating those reported effects has not kept up; thus, a method for measuring PGHD outcomes was previously designed and applied to the exemplar case of Kinect-based stroke rehabilitation systems. A key step of the method ensures that the patient’s voice is included. Allowing stroke survivors to participate in the development and evaluation of health services and treatment can inform healthcare providers on decisions about stroke care, and thereby improve health outcomes.ObjectiveThis paper presents the perspectives of stroke survivors and clinicians on the anticipated effects of stroke survivors’ use of PGHD from a poststroke simulated rehabilitation technology.MethodsThis study gathered the perspectives of stroke survivors and clinicians through three focus groups and three interviews, recruited for convenience. Participants were also asked questions intended to encourage them to comment on the initial items of the patient-reported outcome measure-PGHD. Deductive thematic analysis was performed.ResultsThis paper has further demonstrated that outcomes of using PGHD can be measured. For instance, stroke survivors described that using PGHD could result in positive, negative and nil effects on their health behaviours. Survivors and clinicians had varying perspectives in three of the six themes presented, and emphasise the importance of allowing stroke survivors to participate in the evaluation of digital health services.

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Implementing learning health systems in the UK NHS: Policy actions to improve collaboration and transparency and support innovation and better use of analytics

Scobie

Castle-Clarke

2019

Learning Health Systems

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Learning health systems (LHS) use digital health and care data to improve care, shorten the timeframe of improvement projects, and ensure these are based on realworld data. In the United Kingdom, policymakers are depending on digital innovation, driven by better use of data about current health service performance, to enable service transformation and a more sustainable health system. This paper examines what would be needed to develop LHS in the United Kingdom, considering national policy implications and actions, which local organisations and health systems could take. The paper draws on a seminar attended by academics, policymakers, and practitioners, a brief literature review, and feedback from policy experts and National Health Service (NHS) stakeholders. Although there are examples of some aspects of LHS in the UK NHS, it is hard to find examples where there is a continuous cycle of improvement driven by information and where analysis of data and implementing improvements is part of usual ways of working. The seminar and literature identified a number of barriers. Incentives and capacity to develop LHS are limited, and requires a shift in analytic capacity from regulation and performance, to quality improvement and transformation. The balance in priority given to research compared with implementation also needs to change. Policy initiatives are underway which address some barriers, including building analytical capacity, developing infrastructure, and data standards. The NHS and research partners are investing in infrastructure which could support LHS, although clinical buy in is needed to bring about improvement or address operational challenges.We identify a number of opportunities for local NHS organisations and systems to make better use of health data, and for ways that national policy could promote the collaboration and greater use of analytics which underpin the LHS concept.

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Five key strategic priorities of integrating patient generated health data into United Kingdom electronic health records

Cited by 24 publications

References 24 publications

Measuring the outcomes of using person-generated health data: a case study of developing a PROM item bank

Measuring the outcomes of using person-generated health data: a case study of developing a PROM item bank

‘We are very individual’: anticipated effects on stroke survivors of using their person-generated health data

Implementing learning health systems in the UK NHS: Policy actions to improve collaboration and transparency and support innovation and better use of analytics

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